We’ve witnessed a lot of death in the last few weeks.  Yes, we’ve seen noted entertainers and celebrities pass on.  But even more than that I’m aware of the hundreds of people in Iran who are dead because they chose to demonstrate against an oppressive government. As the United States military prepares to exit Iraq we see an escalation of deaths in some of those communities as rival forces spar to gain control.  China has had its’ share of problems with people being killed as they protest against their government.  And sadly, in the severe heat of the Southwest we learn of the elderly and poor dying of heat exhaustion in their homes without fans or air conditioning.

You see, even as I ponder the “state of death” as a stage of life there is no escape from catagorizing death.  Some die by their own hands, i.e. suicide, drunk-driving, drug abuse or treating their bodies badly until their bodies give up.  Others die in violent and unpredictably sad situations, such as war, battles or conflicts.  In the last year I’ve known of 2 elderly folks who just quietly died in their sleep without a moan or any other type of expression.

While all of this pondering about death may seem morose and depressing, I’ve gained some insights.  If you find this posting too distressing, just close the window or go to another site.  Sharing my thoughts on this subject are not any different than me sharing my thoughts about being hopeful for a cure for Parkinson’s Disease.

I watched a special newscast about an elderly person who had just died from pneumonia.  He had PD for many years and had exhibited freezing, stiffness and trouble swallowing and drinking.  His family spoke of the light in his eyes despite the “mask” on his face and his inability to show any emotion.  I equate this type of death with being locked in a tomb or some sort of capsule. My fear of being captured inside a restricting tube, i.e. closed MRI tube is a reminder of how I would feel being frozen and limited drastically in my body.

Yet, I know that the possibility of this type of death in my future is real.  I do prefer it over a violent death, or one in a scary situation like a fire.  Despite my uneasiness with the method of death or the circumstances surrounding it, I’m not really afraid.  I know I’ve never been abandoned by God.  When my last breath is exhaled, I know my place will be with my Heavenly Father in a reuinion with my earthly parents who have already passed to the other side.

I almost see dying as a beginning.  The beginning of a new adventure where my body does not dictate the activities I plan.  I know there’s much for me to do on this earth before my train to eternity arrives.  But, unlike many we’ve seen lately who have died, I’m not afraid.  I know it will be a beginning of a time where I won’t be “contained” in a body that betrays me.

PAN Applauds NIH Stem Cell Research Guidelines

Today, the National Institutes of Health (NIH) published its final Guidelines for Human Stem Cell Research.  Amy Comstock Rick, CEO of the Parkinson’s Action Network (PAN) and President of the Coalition for the Advancement of Medical Research (CAMR), made the following statement applauding the guidelines:

“We applaud the National Institutes of Health for issuing clear and well-thought out guidelines for the federal funding of embryonic stem cell research.  What must have been a Herculean task, weighing more than 49,000 comments on this groundbreaking research, has resulted in guidelines we believe will advance the field of biomedical research and provide a solid ethical basis for the federal funding of this valuable and promising research.  It’s rewarding to see that the process of engaging the community works.

“We are especially pleased these guidelines offer a pathway by which existing stem cell lines, on which current research has only been able to proceed with private funding until now, now can finally move forward with the full support of the federal government. This will allow research that has been stifled for years to move forward – something the patient community has been advocating for since the restrictive federal policy was imposed by the previous Administration. We look forward to working with NIH and other federal policy entities on this issue as the research continues to evolve and advance, particularly in the area of somatic cell nuclear transfer and parthenogenesis.”

To read this statement on the PAN website, go to:  http://www.parkinsonsaction.org/PAN-Applauds-NIH-Stem-Cell-Research-Guidelines.html

To read this statement on NIH Guidelines for Human Stem Cell Research, go to:  http://stemcells.nih.gov/policy/2009guidelines.htm

Today I am celebrating my freedom as an American.  Today I am celebrating my freedom to live in a country where my vote can be recorded without undue influence.  There are many, many other benefits of being an American. We are a well fed nation – perhaps too well fed if you look at the obesity in our citizens.  We have the benefit of speaking up freely without being imprisoned or killed on a street by our government’s soldiers.  I have the freedom to worship at a church or synagogue of my choice.

Today I am also celebrating my freedom to express myself on a blog.  Thank goodness that I am able to share information, my opinions, my feelings and observations in a free manner – without censorship or editorial restrictions.  While my Parkinson’s Disease restrains my freedom to move, speak, swallow, sleep and write, it doesn’t restrict my freedom to think and express myself.

For all of its’ imperfections, the United States of America really is the land of the free and the home of the brave.

UCB announced that Neupro® (rotigotine transdermal patch) can now be prescribed to all patients with idiopathic Parkinson’s disease in Europe and is newly available for the symptomatic treatment of moderate to severe idiopathic Restless Legs Syndrome (RLS) in adults. This follows the decision of the European Commission to lift treatment restrictions on Neupro® in line with the recommendation of the European Medicines Agency (EMEA), issued on 29 May 2009.

“We are delighted that all patients with Parkinson’s disease in Europe can once again benefit from continuous drug delivery and the improvement in symptoms that is offered with Neupro® and that, for the first time, people with RLS in Europe will also experience the advantages of this important treatment,” said Troy Cox, Senior Vice President CNS Operations, UCB.

Since June 2008, Neupro® supply in Europe has been limited to patients already established on the drug while a new cold-chain storage and distribution system was developed to meet the need for refrigeration of the product from manufacturer to patient. Following full implementation of this system, refrigerated stocks of Neupro® are available in all doses so Neupro® can be prescribed by European physicians for all patients with idiopathic Parkinson’s disease.

Neupro® in Parkinson’s disease

Parkinson’s disease affects over six million people worldwide and approximately three million patients in the seven major markets (U.S., Japan, Germany, UK, France, Italy and Spain). Formulated as a once-a-day transdermal patch, Neupro® continuous drug delivery provides stable drug levels in the bloodstream. Neupro® provides statistically significant and clinically relevant improvements in movement and ability to carry out everyday activities in people with early-stage Parkinson’s disease and significantly reduces off time and increases on time in people with later stage Parkinson’s disease. Neupro® is generally well-tolerated. Adverse drug reactions reported in more than 10% of Parkinson’s patients treated with Neupro® are nausea, dizziness, somnolence and application site reactions.

Neupro® in RLS

In August 2008, the European Commission approved Neupro® for the symptomatic treatment of idiopathic moderate to severe RLS in adults. The UK and Germany are the first European countries to launch Neupro® (1 mg/24 h, 2 mg/24 h and 3 mg/24 h) in this new indication.

RLS affects between 3 and 10% of the population to some extent. In a clinical trial of 458 patients with moderate to severe RLS, Neupro® (1 mg/24 h, 2 mg/24 h and 3 mg/24 h dose) proved more efficacious than placebo in relieving bedtime, night and daytime symptoms in patients over a six month treatment period. Neupro® was shown to reduce symptoms by >=50% in over half of patients (54.2%) compared to symptom reduction in approximately one third (29.9%) of patients on placebo. In addition more patients receiving Neupro® (3 mg/24 h) achieved clinical remission (47.3% vs. 22.8% placebo) and symptom freedom (31.3% vs. 12.3% placebo).

“We look forward to having Neupro® available as a new treatment option for RLS patients. The results of this rotigotine trial demonstrated efficacy, increased opportunity for symptom freedom in moderate to severely affected RLS patients and improvements to patients’ quality of life” said Dr Claudia Trenkwalder from the Paracelsus-Elena Hospital, Kassel, Germany and lead investigator of the study.

Article from: Medical News Today – http://www.medicalnewstoday.com/articles/155690.php

Lately I’ve found myself enjoying the blogs of other people with Parkinson’s Disease.  Here’s a list that I compiled.  Some of these blogs are not solely about PD.  In some cases the blogs reveal other medical situations.  However, these are the ones that I frequent.  I did not include websites since most of you already have those links.

There are a few blogs that were written by PWP who have passed on.  Also, I found a LOT of blogs from people with Parkinson’s Disease that have not been active in a long time.  None of these blogs were included because I wanted a current, updated list.

I hope you will find this list a helpful resource.  If you find other blogs that I’ve missed, please let me know and I’ll re post the list with the updates.  THANKS!

• PD Plan for Life – Living well with Parkinson’s Disease – http://www.pdplan4life.com/index.htm
• Day by Day with a Movement Disorder – I was diagnosed with Parkinson’s Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is ESSENTIAL MYOCLONUS. Share my journey – coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!  http://movementdisorder.dirtybutter.com/
• Shake, Rattle and Roll – An insider’s view of Parkinson’s Disease and DBS http://katekelsall.typepad.com/my_weblog/
• Day By Day Adventures Of The PD Warrior – Living With Parkinsons Disease http://thepdwarrior.com/blog/
• Keeping the Faith – Together we can find a cure! http://www.freewebs.com/keepthefaith1296
• Life With Shaky  - Chronicles of my sometimes funny, sometimes sad, but always enlightening journey of a woman whose husband is diagnosed with Parkinson’s Disease. http://www.lifewithshaky.blogspot.com/
• Shaky’s World  - A first hand account of life with Parkinsons from a well traveled 50 something male, who chose to start a new family late in life only to find that “Life is what happens while we are busy making other plans.” http://www.shaakysworld.blogspot.com/
• Parkinson’s patients: yes we can dance – http://parkinsonsdance.blogspot.com/
• We Will Go On -Facing the Impact of Parkinson’s Plus through the Eyes of Faith http://wewillgoon.blogspot.com/
• Parkinson’s Focus Today -Welcome to my PD journey of discovery, progress and stops along the way………. You are invited to add your comments, to click the blog index for all entries or to select by subject from the topic index below Mongo.    http://parkinsonsfocustoday.blogspot.com/
• Walking My Path with Parkinson’s -Sharing my life and times dealing with Parkinson’s Disease and everything else. http://marian-pathwalk.blogspot.com/
• Welcome to the New Faces of Parkinson’s  Disease website – http://www.newfacesofparkinsons.com/
• DEEP BRAIN DIARY: My Life as a Guy with Parkinson’s Disease! http://deepbraindiary.com/
• Today With PokieToo and Parkinson’s and Acute RA Disease -This is a daily journal of my fighting not only Parkinson’s Disease but Acute Rheumatoid Arthritis with My Lord on one side and Patientslikeme.com on the other….with a sense of fun and friendship all around – http://justmeantiques.blogspot.com/
• Parkinson’s Journey – Founded in 2005, the purpose of this site is to offer encouragement to the Parkinson’s Community and hope to those who are struggling with any illness.  Our desire is to come alongside and assure you that you are never alone. We are walking this path with you.  http://parkinsonsjourney.com/
• METAMORPHIS of BTRFLYNANA / LYME and PARKINSON’S DISEASE – http://www.mobmsa.blogspot.com/
• VD Writes - http://vigwig.blogspot.com/
• On and Off – The Alaskan Parkinson’s Rag – http://offandonakpdrag.blogspot.com/
• Parkinson’s Insights; Perspectives from the Parkinson’s Disease Foundation Parkinson’s Insights is the blog of Robin Elliott, Executive Director of the Parkinson’s Disease Foundation. Parkinson’s Insights is designed to give you the inside scoop about the latest science, community, pharmaceutical and government news impacting your life with Parkinson’s. http://parkinsonsdiseasefoundation.blogspot.com/
• Strength and Dignity – http://strengthanddignity.blogspot.com/
• Lab Rat’s Desk – collection of “from the lab rat’s desk”, one opinionate old crone’s adventure with terminal illness – http://labratsdesk.wordpress.com/
• Anuket’s Crusade-Parkinson’s, politics, that sort of thing – http://anukets-crusade.blogspot.com/
• Parkinson’s …….A New World; a collection of info on Parkinson’s by a PWP http://haroon-parkinsonsanewworld.blogspot.com/
• Enfermedad de Parkinson - My own Arcadia Blog (Spanish Language Blog w/Parkinson’s Info) http://myownarcadia.blogspot.com/
• Firefighters with Parkinson’s Disease - http://www.firefighterswithparkinsons.org
• PARKINSON’S BLOGGER—TREMORS; A JOURNAL AND RAMBLINGS OF A PERSON WITH PARKINSON’S. http://parkinsonsblogger.blogspot.com/
• PD and Me – http://www.not-likely.co.uk/blog/
• Parkinson’s Disease- The Journey to a Cure – http://parkinsonsthejourneytoacure.blogspot.com/
• StudioFoxhoven-This studio is in existence because I believe that art is best when done in community with others. The articles chronicle my journey with Parkinson’s disease and are a way for me to find the humor in my day to day challenges. http://studiofoxhoven.squarespace.com
• TOO – A blog by Sergey Brin – http://too.blogspot.com/
• Living with Parkinson’s Disease: The Living with Parkinson’s Disease Blog will serve as a source of product information and reviews for Parkinson’s sufferers and their loved ones, as well as an open forum for patients, relatives of patients, doctors, therapists, and healthcare providers. http://parkinsonsdisease.wordpress.com/
• Bobology – A Midwestern retiree with time to muse, meditate and scratch the itch – http://bobciz.blogspot.com/
• Scotsman – http://bobciz.blogspot.com/
• Robert Aiken – http://robertaitken.blogspot.com/2009/04/health-report.html
• Parkinson’s Disease Awareness – Making the world a better place – http://allaboutparkinsons.wordpress.com/
• PWP News – News relative to Parkinson’s Disease – http://parkinsonsnews.wordpress.com/
• Moving Forward – a blog by Drs. Bradley Hiner, Serena Hung and Karen Blindauer Medical College of Wisconsin Neurologists – http://www.froedtert.com/HealthResources/ReadingRoom/HealthBlogs/MovingForward/
• HEIRS Environmental Illness Research Blog – a community website for people who have been effected or have had family effected by environmental illness and other health conditions – http://heirsonline.wordpress.com/about/

We are now in our 16th day of triple digits temperatures in Texas.  The ground is dry and parched and the plants and trees are suffering.  Their droopy leaves scream for rain, but the sky remains sunny and bright blue.  I’m wondering if the people in the Northeast who have had days of rain would gladly switch with me?  My tolerance for the heat decreases as I age and as I progress with Parkinson’s Disease.

Sleeplessness is a typical response to Parkinson’s Disease.  Almost every PWP that I know experiences insomnia some time during the expanse of this disease.  Many of us have had sleep studies and some find that they need the CPap machine.  My sleep study did not indicate that I had a sleep disorder of any type.  However, I’ve never been such an insomniac.  When I don’t sleep at night I find myself “drifting off” during the day.  Sometimes I fall asleep at my desk and sometimes I have to take a little nap break during the day.  I don’t know how PWP who work outside the home do it.  I’m always careful not to drive if I’ve been without sleep.  It’s too much to worry about and I don’t want to put myself or anyone else in that situation.

There are consequences when you don’t sleep.  Tolerance for pain and discomfort are reduced.  I become more irritable and impatient.  I’ve read that it takes a toll on one’s heart.  And up until now, that’s been about the only thing within my body that has not had trouble functioning. 

While I can’t do anything about the heat – except stay inside in the AC.  I can do something about the insomnia.  Sure, there are drugs to take, but with the PD I take enough of that already.  What I’ve found that helps me is tea.  Camomile tea with apple nuggets or even a decaf rooibus tea flavored with peach.  Another thing that helps me unwind and calm myself is purposeful breathing.  I try to sit still (not exactly successful when I have my tremors) but I try to sit straight on my sitting bones.  Then I breathe deeply and rhythmically counting the same count for every breath I take in and expel.  This seems to help, but there are times it does not.  When it’s 3AM it’s difficult to find other activities to calm the body and mind.

I’m open to suggestions if other PWP have any they would like to share.  I know the tremoring and the restless legs are a part of the disease and I do take my meds to control that.  But somehow sleep escapes me these days.  I wish I could find the answer.  Maybe tonight I’ll be able to close my eyes and find that elusive dreamy state.  I hope so.

I had my check up yesterday with the neurologist with whom I am involved in the Phase 4 Clinical trial to get the Neupro patch in distribution again in the United States.  The appointment was lengthy and endless questions were asked.  It’s especially important for the UCB Schwarz Pharma people to get as much information about these trial patches before they are re-released to patients in the U.S.

Three little tidbits of information that I received while waiting for my appointment.

1. An unconfirmed source explained that the Neupro patch should be re-introduced in the United States market by December, 2009 or January, 2010.  Since the trial is in Phase 4 and the demand is increasing, the prediciton is that we will have them available late this year!  YIPPEE!!!!
2. The same source told me that U.S. patients can no longer receive the patches from Canadian pharmacies.  They were not sure if this was a requirement by UCB or the Canadian government.  However, they had attempted to purchase patches from Canada and were told the pharmacy could no longer dispense to Americans.
3. Same source mentioned that “Asset Chemist” in Great Britain and Israeli pharmacies were still selling to Americans.

Due to the abundance of jerking legs during my surgery recovery, my doctor increased me to 6 mg of Neupro applied with two patches once a day.  While waiting, a person expressed their surprise that my dosage was so low.  They told me that their normal patch dosage was 16-20 mg per day.

The stress of knee surgery and the exhaustion I’ve had following it have probably contributed to the increase in the RLS I’ve had at night.  However, the Stalevo will have to be increased as well since I’m tremoring in my arms and hands more than ever.

If any of you have updates about the re-release of Neupro or restrictions on purchasing from elsewhere in the world, please let me know and I will post it here for everyone to see.

It seems there are radicals on every corner.  Adult stem cell advocates blast the embryonic stem cell advocates.  Pro-life radicals are ready to kill anyone who disagrees with their “righteous” beliefs.   Bloggers spew hatred across the internet if anyone dares to express an opinion that doesn’t match theirs.  This is the good ‘ole U.S. of A.  We’ve spent so much time and resources fighting and arguing – spewing hatred and death, that we’ve become comfortable ignoring the importance of saving lives.  I’ve read many, many of your blogs, and all I see are insecure Americans who would rather spend their time arguing and killing than finding solutions.

Our Congressional “leaders” feud over the monies they have.  They’d rather fuel death squads across the ocean than spend the resources of our once great country on research that could save lives.  I’m fed up.  I’ve given up on seeing any Americans contribute to any breakthroughs for the cure for Parkinson’s Disease.

Instead I’m going to focus on the brilliant work of Swedish scientists like developmental biologist, Johan Ericson, and his colleagues at Karolinska Institutet in Stockholm, Sweden.  He and his colleague, Thomas Perlmann, have been able to develop dopamine-manufacturing nerve cells from stem cells.  All of you disagreeable Americans go ahead and slam me with comments – you don’t have a cure for PD, do you?

So, you Americans go ahead and continue to argue, kill one another, criticize one another and live hypocritically. Continue to spend your time, efforts and energy on “saving” the lives of embryos.  Go ahead, don’t cease debating on the TRUE merits of adult stem cell research versus embryonic stem cell research.  Feel free to buy your assault rifles to silence anyone who disagrees with you. 

Because I’m going to put my money on the Swedes to find a cure for Parkinson’s Disease.  They are the closest to finding a cure in my lifetime.  And the way I see it, the longer you Americans waste your resources and the work of your good intentioned scientists – the sooner the Swedes will scoop up the funding to find a cure.

Yes, I have two of them. One is currently out of order due to recent surgery to repair meniscus cartilage.  Yeah, it hurts.  Yeah, it’s hard to walk. But I’m the eternal optimist, right?  And I KNOW this is going to be better than it was.

I’m doing the exercises.  I start out very stiff and cannot put any weight on the leg, and then it seems to loosen up some and I can use my cane to walk.  I hate the crutches, they really did hurt my arms, and I borrowed a walker, but it’s so bulky.

There’s this neat ice machine called the Kodiak.  You fill it with ice and water, strap on the knee wrap that has a hose hooked to the Kodiak.  And it pumps COLD water through the wrap to keep the knee cold.  Amazing what modern inventions we have to replace the ‘ole ice pack!

I had to wear the Neupro patch during surgery because I was afraid I would kick someone while I was under anesthesia.  Probably wouldn’t have done it, but I didn’t want to take any chances.

More later….my lunch is ready and I have to hobble into the kitchen =O)

The temperature is supposed to be over 100 degrees here today.  Wish I were in Hesperus where it’s definitely cooler! I’m ready for rain, not just a little bit, but some SERIOUS rain.  Our lake is down 21 feet below normal, there is a burn ban and many plants and trees around town are dying.

If a rain dance would help, I’d do it.

We really need the rain!